Well. It’s been a wild year.
Exactly one year ago today I was diagnosed with Acute Lymphoblastic Leukemia/Lymphoma.
Exactly 1 week ago today my doctor said the words “complete remission” to me.
What a difference a year makes.
A year ago I felt the healthiest I had ever felt in my life. I was working out (sometimes twice a day), plus walking or biking to work every day. I was eating healthy and drinking less. I slept well and took care of my mental wellbeing. I felt amazing. Then everything flipped.
I went in to see my doctor (by myself) for my biopsy results on an innocuous Thursday morning in February. Nervous but also thinking about all the stuff I’d have to do when I got back to the office. She called me in from one room to the other where she told me “well, it’s not the news we were hoping for. You have Acute Lymphoblastic Leukemia”. She proceeded to answer what questions she could, and told me she had already spoken to a doctor at Princess Margaret and I would have to go in immediately the next morning for a day filled with tests and information. She said to bring a lunch and my mom because it would be a long and tiring day. She told me I would lose my hair. She told me that I’d be off work for at least a month, but to not look up how long the treatment plan itself would be because that would be daunting and until we had full results after the next day’s tests there was no point in overanalyzing and worrying.
I went back to the office after that meeting, in utter shock, and managed to book myself a meeting room where I called my mom and then brought in the people I needed to tell that I would be leaving work indefinitely that afternoon and I had no clue when I’d be back. After telling a couple people, saying “so I just got some news…” started feeling more normal, which was very weird.
That was probably one of the scariest days of my life.
Cut now to February 15 of this year and back to those “complete remission” words. I’ve technically been in remission since at least the summer, but we didn’t know if the little bit of mass that remained in my chest was dead tissue or active (cancerous) tissue. The only way to know would have been through a Pet Scan, which I didn’t think I’d have until after treatment – because chemo can light up as false positives on these tests, and until my treatment is done I won’t have a long enough break between chemo sessions to guarantee that won’t happen.
But about a month ago my doctor told me she wanted to order a Pet Scan to check. If it came back negative – Great! We can all feel real good about that. If it came back positive, we’d take it with a grain of salt and go from there, possibly throwing in a couple more treatments to really nail things and keep a super close eye on it.
(Even the technician who injected the radioactive serum and asked me all the required questions before the scan called my doctor to double check she was okay with me doing the scan considering I’d had a chemo treatment only 5 days prior.)
The weird thing about the online Medical Portal I’m on is that you can see your results before you talk to your doctor. Which can sometimes be good but other times be super stressful. These results came back the same day and I don’t think I’ve been more nervous waiting for them to come up. (Even my doctor said she held her breathe as she clicked through). But they looked great to me. The only thing that showed up as abnormal was my ovaries – but they had written that it was likely functional (a contradictory statement, since functional means normal).
I called my doctor the next day to discuss the results and she called me back the day after (so test on Tuesday, call on Thursday, bless Canada’s healthcare system), and she said the results were ‘fantastic’ and exactly what we wanted to see.
But the words I’ve wanted to hear came a week later in our actual follow up appointment, when she told me I was in ‘complete remission’. (She also said that she doesn’t think the ovaries thing is anything to worry about [especially since it was both ovaries]. It is most likely just functional and poor phrasing on the part of the technician.)
This past year has taught me so much about myself, life, gratitude, love, and positivity. I felt like a generally positive, grateful person who didn’t take her life for granted prior to this, but I now believe I am one of the luckiest people out there.
That isn’t to say that this year hasn’t been challenging (obviously). I try to remain positive and happy as much as possible, and I certainly try to put that attitude out on social media or out to acquaintances. But this has been tough beyond belief. There have been so, so many tears. I’ve yelled – at myself and others (sorry). I’ve felt defeated and exhausted and depleted. I guess this is to say that when we have to, we’re all able to be as strong as we need to be, but that doesn’t make it easy.
Looking back, I’d say that cutting my hair was still the most difficult day emotionally and mentally for me. And throughout the intensification phase, having your body not be your body any more is beyond challenging. Not being able to walk up a flight of stairs, do a push up, or touch your toes when all of those things used to be a light warm up before a workout is so difficult to wrap your head around. Chemo brain is frustrating. Roid rage is very real. Moon face is realer. But slowly my old body is coming back. I did 20 (small, easy) yoga sessions at home in January. In October I could barely do a downward dog. I’m proud of my strength and looking forward to building on it, little by little, every day.
My support system these 12 months has been incomparable. I cannot believe the amount of people I have received constant, unwavering support from. To you, and you should know who you are, I say THANK YOU. That is the understatement of the year, but I honestly do not know what to say to properly convey just how grateful I am to all of you. I truly would not be where I am now if it weren’t for you. You are all incredible.
Every day I feel more like myself. I’ve been working full-time from home since the beginning of January, and that has made me feel like me. I’ve now gone into the office a couple of times, and that has made me feel like myself even more. As spring time comes and flu season recedes I look forward to hopefully visiting with friends and going out a little bit more. While working from home certainly has its benefits, it does get lonely, and being around people during the day can be so lovely. (But I also will still use this as an excuse every time I want to stay in and watch Survivor with Symon instead).
The other piece of good news I received from my doctor was that I can be a little more lenient on what I eat. Which means I have consumed an unhealthy amount of sunny side up eggs in the past week. It is my favourite food that I have missed SO much over the past year. Any egg I’ve seen on instagram in the past 12 months has been torture. I can’t wait to go to a restaurant and order what I want soon.
I’ve been dreading and looking forward to this month, with all the memories from last year but also reflecting on how strong I’ve been and all I’ve been through. Obviously it’s been much better than last February, and these results really put the cherry on top. I hope 2019 continues to kick 2018’s ass. So far, so good.
Another year of treatment (65 more weeks to be exact). Maintenance phase will continue as is – hospital/doctor visit once every three weeks + a delivery of chemo the following week (if you need some methotrextrate I’ve got some in my fridge right now), and visiting a clinic for those two weeks in between the hospital visit. The clinic is EXTREMELY quick compared to the hospital. Door-to-door it usually takes 45 minutes or under. The hospital is anywhere from 4-7 hours depending on wait times and if you need a blood transfusion.
Also next – hopefully a dog. If you come across any schnauzers, doodles, or other hypo-allergenic dogs for adoption (preferably more than a year old) please let me or Symon know.
Sorry for such a long post, and thank you everyone for the congrats and well wishes over the past week – it’s been a crazy one and I don’t know if it’s even hit me yet, to be quite honest. I read all your comments and appreciate each and every one of them.
Now I’m going to go enjoy some more runny eggs and maybe have a glass of wine (don’t tell my doctor) to celebrate this anniversary and being in remission.
Love and positivity always,